Christopher  was finally going to visit his family in Texas. Shortly after the pandemic started, his mother had been diagnosed with Parkinson’s disease. With all the COVID restrictions and concerns, he hadn’t been able to travel right away, but now he was ready to go. He had a negative COVID test, a rental car, and plans to work remotely from the guest room in his grandmother’s house.
When he got there, it didn’t take long for him to realize that his mom wasn’t the only person who needed help. Grandma needed help getting dressed, taking a shower, and going to the bathroom. She even needed help eating sometimes. But now that his mom was sick, who could take care of Grandma? There was no other family around. Christopher looked into moving Grandma to a nursing home. And what he learned scared him:
By July 2020, more than half of all deaths from COVID-19 in Texas were in nursing homes and assisted living facilities.  Sadly, Christopher wouldn’t have found much better odds if he was looking for a nursing home where his sister lived in Florida (50%), where his aunt lived in Ohio (69%) or in his own home state of Pennsylvania (68%).  In fact, while only 0.6% of the U.S. population live in nursing homes,  assisted living and long-term care facilities, these residents account for 45% of all COVID 19 deaths. 
As a nation watched nursing homes ravaged by COVID-19 outbreaks, family caregivers started to ask themselves – why didn’t I keep my loved one at home with me? Before the pandemic, the decision to place a loved one in a nursing home was already difficult. But, with total confirmed COVID cases in nursing home residents approaching 2,000,000 nationally  and facility staff accounting for more than one million confirmed COVID cases nationwide,  family caregivers are now motivated to keep their loved ones at home more than ever.
We already know that most Americans want to age in place. Nearly 80% of adults over the age of 50 want to remain in their communities and homes as they age.  Living in your own home, or a home shared with a family member or friend, can help people live independently, improve quality of life, and even improve health outcomes.  In fact, improving caregiver well-being can also help prevent nursing home placement! 
As more Americans consider keeping their loved ones out of nursing homes, what can we do to provide the right level of care for our family members and the best possible supports for family caregivers? It starts with a re-imagining Medicare and Medicaid benefits to include expanded home and community based long term services and supports, which will allow us to care for our loved ones where they are safest and where they want to be. We must support family caregivers so that as they provide care, they do not become the next patient themselves.
We should institute an in-home assessment by a trained nurse, such as the intake visits done by home hospice. Providing the right mobility aids, based upon an in-home assessment, and rearranging the furniture or removing area rugs can be a great first step before considering more expensive home modifications. An intake visit could also yield a list of covered durable medical equipment that would make living at home safe and comfortable. A hospital bed can reduce fall risks, improve circulation and reduce the risk of bed sores. A portable commode can be placed over an existing toilet for an immediate conversion to a safe, accessible toilet with handrails.
Medication management and home health benefits need to be part of the new in-home model as well. With covered monthly or even weekly home visits to assess changes in health status, safety and nutrition, aging in place can be continued safely.
Expanding existing supports for caregivers, such as education and respite care, access to 24-hour call centers for caregivers, local direct dial nurse help lines staffed by nurses and other medical professionals with access to your loved one’s medical records, and access to a national corps of volunteers  to assist with everything from help using a smart phone for video visits to shoveling snow will increase the feasibility for families to provide home and community based care.
By shifting existing benefits and services we can create a new model of care that reflects what we have learned during the pandemic.
John Schall, CEO, Caregiver Action Network